Has anyone got a maw trip without a life threatening problem?

[eeyorelori]

Ok to explain a little better my son was to easter seals last week and a girl that helps us with all our dr stuff said they were going to disney and i said id love to go again ..And then she says hey you probally get a maw trip for ds and i said no hes not eilgleble..Then she says they changed things and you dont need a life threatening just having what my son has is a shortened life span ..I dont want to go getting my spirirts up ..So has anyone else heard of this or got a maw trip ..

[dclfun]

MAW is for children who have a life threatening condition and "might not" live past the age of 18. Your Dr. has to fill out paperwork stating that in their opinion your child might not live to adulthood based on their medical condition. It no longer is a requirement that a child be terminally ill- that's the part that changed and that many people aren't aware of, including donors.---Kathy

[skoopman]

I would like to second what dclfun said, MAW is for kids who have a "life threatening diagosis" but they do not have to be terminally ill, which used to be the case in the past. As long as your ds's condition is not "life threatening" I doubt he would qualify. If you want though, you could always contact your local chapter and see what they say.
Suzanne

[Purple Princess]

Keep in mind it must be the childs wish and not the parents. My daughter is 20 but mentally 4 and Disney World is her request. She wants to see Bear In The Big Blue House show :)
(just hope no one looks at her weird for clapping along at her age. That happens until they figure out she is mentally disabled as well as physically.)

A Dr. will have to fill out the paperwork and you should learn fairly quickly if your son is eligible for a Wish. Contact MAW and they can help you.

I thought my girl was above the age limit but our local chapter goes up to age 20 so we just made it. Good luck and let us know how it goes.

[eeyorelori]

oh no when i ask him where hed love to go he says mikney mouse ..I did get in touch with maw 3 yrs ago and they told me he was eligable then the papers went to the doc who has never seen my son [only nurse prac have seen him ] and the docs said by the way the papers read he wasnt eliglble ... So now im told they did change some things around and they are alot different now ... im just afraid of the disa pointment again .. As i said a freind at easter seals is the one who started it all ...Just wondering if anyone got a trip recently and dignosis is cp with mental retardation ...

[mommyandmore]

There is a foundation called Sunshine Foundation that grants wishes to kids with "severe" disabilities as well as kids who have survived abuse. My son qualifies for their program and his diagnosis is MR, CP and visually impaired. After he qualified, they did say it would be a 2 year or so wait but it might be worth a try for you? I just did a google search to find the website and then there is a place to nominate kids- you can nominate your own child too no problem.

[roseprincess]

oh no when i ask him where hed love to go he says mikney mouse ..I did get in touch with maw 3 yrs ago and they told me he was eligable then the papers went to the doc who has never seen my son [only nurse prac have seen him ] and the docs said by the way the papers read he wasnt eliglble ... So now im told they did change some things around and they are alot different now ... im just afraid of the disa pointment again .. As i said a freind at easter seals is the one who started it all ...Just wondering if anyone got a trip recently and dignosis is cp with mental retardation ...
I think I remember getting a PM from you awhile back, a question about MAW,and the Easter Seals thing, maybe you changed your screen name? Unless I'm thinking of someone else?
Anyways, MAW grants wishes to kids that are considered "life threatening".
Your child's doctor, most likely his specialist, is the one to determine if hte child is life threatening or not. Child's doctor is the ultimate person to determine this in the paperwork. Each local MAW office in hte US has their own guidelines. Most MAW offices have the same guidlines as of which conditions are considered life threatening or not. But it is the child's doctor(specialist) who is the ultimate person to check "yes" child is life threatening or "no" child is not life threatening. It does help if the doctor or specialist has known your child since birth. Most likely if you have a doctor that does the paperwork and knows your child really well since birth, then it shouldn't be much of a problem to get approved for a wish to be granted, if the child is really considered "life-threatening".

My dd has a complex congenital heart defect, had 3 open heart surgeries. About 2 and half yrs ago, I referred my own dd for MAW via the MAW website. My dd's ped cardiologist did her paperwork to determine if she was considered life-threatening. Her ped card. took care of my dd since birth, so he knew all the surgeries dd went thru, my dd's systemic infection she had, (the complication from one of her heart surgeries). He knew all the ups and downs we went thru with dd. So that helped alot getting her approved for MAW, since her ped card. was there since birth.

I think I know what you mean about people from Easter Seals trying to help with referring. I had to be hospitalized when my twins were 1 yr old.
I had really bad pancreatitis and passing gallstones, I was in pretty bad health at that time. Anyways, an older woman from my church and her friend(worked at Easter Seals). Her friend from Easter Seals tried to help and promised to get a respite worker out to my house to help watch my twins when I got out of hte hosp., so dh could go to work. Anyways, I did all this Easter Seals paperwork from my hosp bed and I had dh mail it out for me. About 2 weeks later(I was home from hosp by then), I get this rejection letter stating I couldn't get respite help from Easter Seals because my kids were not getting OT or PT from them. I was like"what??" I was promised from this woman that volunteered to watch my kids without pay (who also worked part-time at Easter Seals) that I shouldn't have any problem getting a respite worker out to help me with my twin toddlers while I was recovering from my pancreatitis.
I know this lady meant well, but it was a bunch of balogney at the same time.
It was one of those false promises from a worker from Easter Seals :sad2: . Not saying Easters Seals is bad. I'm sure it's a great foundation/ charity. I never had to deal with them before, just this about getting a respite worker out to help me when I really needed the help.
I guess people from Easter Seals mean well, but their workers need to be careful what they say, so they don't get caught in a "false promise" type of thing.

Maybe you can try other foundations, like the Sunshine Foundation someone had mentioned? Just keep perservering with different foundations and hopefully one of them will accept and grant your ds a wish!

Best wishes in your search! :wizard:


Rosemarie

[PammyPoppins]

Hi!
Can you talk to your child's doctot about if her condition is life threatening and tell him you would like to refer her to make a wish but you would need him to verify that her condition is life threatening for her to qualify for a wish. I had already discussed it with my child's neurologist before he received the make a wish papers I know the person who just posted before me is right it is the doctors decision if the child receives the wish trip by stating if he feels the child condition is life threatening. When I contacted maw my doctor already knew I was going to and to expect the paperwork. I got a letter from maw within two weeks of filling out the refer a child form and it said my daughter was appproved for a wish, they had already contacted the doctor whose name I provided on the form and he had sent the paperwork back to them.
PammyPoppins

[eeyorelori]

Well it comes down to this, we never see the doctor we always see the nursc pract. and all the specialist he sees is on a yrly basis now and they say they dont see him enough ..I was just wondering since they say with what he has he will have a shorter life span so he would quilify now ..B/c things changed from 3 yrs ago > I did go to the sunshine found. and emailed them since they do give wishes to kids like my ds..Yeah i know what you mean with easter seals ..They were a god send with ds when he was 10 months and we didnt know what was wrong with him ..Any ways when he started school they were the theripist the school had ..Now the school dropped them and ester seals has been screwing me around big time ...For instence he was eval for a new wheel chair and walker ..I asumed they took care for eveything from sept on he had a close call with his walker near thanksgiving and i callled and demanded they give me a used walker till his new one came in ..It was like pulling teeth ..I kept calling is it in yet , no they kept saying , Finally in jan insurance called and said they needed all this stuff or no wheelchair ..Im like flipping i said i was told it was already ordered ..Any way it took 10 months of me on there butts to get anywhere..I kept saying i bet its since my school dropped them that we are being treated lkie garbage ...
Long story short i was just tlod he may not borrow any more devices from them since the school wont contract them.. Hello thats not my fault or my ds . I just saw the nuero through them and he said about trying forearm crutches and they wont let me borrow so we can se e if he can handle them or not ....I know how they work and i dont know if id use them again. I am really disgusted with them ..I even called the big wig and she bascially laughed in my face when i complained how long it took it took for the wheel chair and walker ..I was of course crying saying you pepes have no idea what its like having a handicappe d child and caring for them and then having to deal with all this crap and she just laughed at me and said there was nothing she could do .....
Sorry i have been holding this in and i just needed to vent thanks for all the replies.......

lori

[roseprincess]

:grouphug:

[eeyorelori]

Thanks Rose needed a hug .. its been a very bad year .....

[SueM in MN]

If the MD doesn't feel he sees the child enough to decide whether the child has a life-threatening condition, I'd suggest you ask the Nurse Practitioner who does see your child to talk with the doctor.
But, if the doctor doesn't feel it is a life-threatening condition and won't sign the forms, your child can't qualify for a wish thru MAW.

For the wheelchair, walker, arm crutches, you need to talk to the Physical Therapist at your child's school. They have responsibility to meet his needs.

[Schmeck]

Wouldn't the wheelchair, crutches, etc, be covered under your son's medical insurance?

[SueM in MN]

Wouldn't the wheelchair, crutches, etc, be covered under your son's medical insurance?
::yes::
I was thinking that too.
My DD recently had a trial of a gait trainer. Insurance paid for that and will pay for the gait trainer too (the test went well).

[eeyorelori]

The nurse pract. was not allowed to sign anything , not a doc. ..And regarding the walking crutches we need to borrow a pair first to see if they will work for him and if he has enough balance ..So pt doesnt want to order a pr. if he wont be able to use that type ...So on and so forth .. i just think it stinks with how they are taking it out on us when it was the school that gave them up ... I think i need to write a letter to a higher up ..I did get the application for the sunshine foundation.... It is soooooooooooooo hard having a handicapped child to begin with but with all the crap i had to face with the insurance, school and easter seals ...Boy i guess thats why i have broad shoulders...Thanks for the vent , its nice to know i have some place to go every day to brighten it up a little.....Thanks again Lori :grouphug:

[SueM in MN]

The nurse pract. was not allowed to sign anything , not a doc. ..
I don't think you got what I meant. If the nurse practitioner agrees with you, but can't sign the form, ask her to talk with the doctor.
And regarding the walking crutches we need to borrow a pair first to see if they will work for him and if he has enough balance ..So pt doesnt want to order a pr. if he wont be able to use that type
They should be able to be borrowed free of charge for a trial.
If there is no medical equipment company that will let you borrow them for a trial, the pt may know about a lending closet that will loan a pair. Schools also often share equipment like that so that no one school has to buy it all.

[eeyorelori]

Sue, the nurse pract. never sided but i told her what the maw peep told me that he qulified and when the doc got the papper work she tried i guess to bat for us but the doc said what was on the paper work he was not qulified... So that was the end she couldnt sign and i quess her side didnt matter ...I told you we go through 3 docs a yr at the clinic and i never get to know any more than once if ever the nurse pract. always sees us when sick and when its a physical its never the same doc... They do the intern and leave ...And all his specialist said they only see him in the clinic and dont feel compfortable enough to sign ...I gave up my docs *&^%$..beep ...lol Any ways my pt at school always got her things borrowed from easter seals now easter seals isnt in contract through our school anymore they told me right out, if the school would of kept them then hed get all the equipment he needed and services....But since the contract was dropped my son pays the price ...I think i am going to call the congressmen office and complain ...Just b/c school dropped them it isnt andys fault why does he have to pay ...Thanks for every bodys help i am soo depressed ...

[eeyorelori]

I don't think you got what I meant. If the nurse practitioner agrees with you, but can't sign the form, ask her to talk with the doctor.

They should be able to be borrowed free of charge for a trial.
If there is no medical equipment company that will let you borrow them for a trial, the pt may know about a lending closet that will loan a pair. Schools also often share equipment like that so that no one school has to buy it all.
I talked to Nikki {pt} today she always borrowed from easter seals but since she got there old contract they are being Beep Beeps and wont loan out...

[belle&beast]

I talked to Nikki {pt} today she always borrowed from easter seals but since she got there old contract they are being Beep Beeps and wont loan out...
Contact the supervisor of Special Education- not to get Nikki "in trouble" but to voice your concerns about the lack of equipment. I am an SLP in the schools and there should be another way to test equipment without Easter Seals. The supervisor may not be aware of the issue and maybe could find another agency that loans equipment. We have lots of equipment floating around our corporation that was purchased by the Special Education Department as children outgrow it, new students are loaned the equipment.

[dclfun]

Also check your son's IEP to see what's been written. If part of his education plan is to use or try new equipment to further his physical progress, then it HAS to be provided by law. There are lots of protections and services for disabled children. I agree with Sue- contact the head of Special Ed. in your school district. I was an O.T. in the school system and your child shouldn't suffer due to a failed contract.---Kathy

[eeyorelori]

Also check your son's IEP to see what's been written. If part of his education plan is to use or try new equipment to further his physical progress, then it HAS to be provided by law. There are lots of protections and services for disabled children. I agree with Sue- contact the head of Special Ed. in your school district. I was an O.T. in the school system and your child shouldn't suffer due to a failed contract.---Kathy


There isnt anything in his iep about equipment ..We always got our stuff from easter seals ..I guess i will call the school on monday and tell them what i have been told and say you dropped the contract now you find equipment for him to borrow... I have a appointment on monday with easter seals to see if he can walk with them but i dont think they will let me borrow them ..But i am worried itll take 10 months again like it did the wheel chair and walker ...thanks for all the help and ideas ..More phone calls ...

Lori

[eeyorelori]

We saw the pt monday and ds got to borrow a pair of crutches. He was all over with them but i started an incentive calendar and he gets a gold star and in a 2 week span we are giving him a dollar .. It worked well with getting him in underware and has been potty trained since june ..So if it works i will do anything to get him to walk ..Any hoo I set him up with extra pt with easter seals so they dont take them back right away but omg he made me cry ..We did it this morning and he did so good ..His balance is what the cp effects and he can stand like 3 seconds before he goes down ..Today he stood for 50 seconds.and walked about 8 feet turned around and walked back i just put my hands on his shoulders for very little support.He did great with them ...I cant wait its finally coming around ..Maybe he will walk ...... :banana: :cheer2: :cheer2: :cheer2: :woohoo:

[dclfun]

Lori- wow...your post brought tears to my eyes. I'm so glad you got the crutches and that your son is making such wonderful progress already. I'm so sorry you had to go through so much to get something so desperately needed.---Kathy

[eeyorelori]

Lori- wow...your post brought tears to my eyes. I'm so glad you got the crutches and that your son is making such wonderful progress already. I'm so sorry you had to go through so much to get something so desperately needed.---Kathy


Thanks Kathy we have been waiting sooo long for these days ..he is 7and a half and just got potty trained and now on to the walking ....My brother told me hed walk and since he took his own life last year its been a very rough year for my whole family and when i saw him walking it just brought tears like my brother is there walking him ...Sorry its been hard and his anniversary just was sooo its been a tearful year..But the last week has been GOOD TEARS...[Love ya Bro ] he has the crutches one week and goes back today [wensday] so im curous to see what the pt says......thanks .. :cheer2:

[SueM in MN]

sounds like a successful trail.
Good luck.

[eeyorelori]

we saw the pt yestarday.she said he lookied good walked well and stood along time for her also He wants to darn near run with them ..He looks great and always such a big smile for doing it ...She said to keep practiceing and wed go from there ..The lady that was doing the maw trip said the doc will be there on sept 18 so keep your fingers crossed for us that the doc will sign them and we will go from there ..Thanks for all the help . :grouphug: